Craig Morgan Teicher is an American poet and literary critic whose first collection of essays—We Begin in Gladness—was published in November. Earlier this year he wrote an essay in The New York Times about what he’s learned by reading aloud with his son Cal. Cal, 11, has cerebral palsy and doesn’t speak. We talked about communicating beyond, or outside, language.

BLOOM: What are Cal’s favourite things?

Craig Morgan Teicher: Music is definitely one of them, but more than anything, he is happiest when spending time with other people. I feel his life is animated by his proximity to people. He’s very in love with his younger sister, and he lights up whenever she’s anywhere near him. He loves going to school and being part of the chaos that is his classroom. We do a lot of music at home. I love jazz and instrumental music and we have that on all the time, and we make up silly songs on the guitar and make a racket.

BLOOM: How does he communicate?

Craig Morgan Teicher: Smiling is his most basic way of saying 'yes,' and his 'no' is pretty clear. It’s challenging when I try to explain what it’s like to communicate with him. The people who spend a lot of time with him can see a lot of the shades of his feelings. One of the big challenges of my life—or not challenges, but wishes—is to really understand him. I feel like I’m missing so much of what he’s actually trying to tell me. And yet I also feel like I get so much of it.

BLOOM: Could he use a communication device?

Craig Morgan Teicher: He’s tried everything. It’s the usual problem with severe cerebral palsy that he can’t quite get his hands, his head or his foot to activate a switch. We haven’t had much success with most of what’s out there. He uses an eye gaze system with mixed results at school.

BLOOM: With my son I always found the technology was cumbersome and not nearly as intuitive and automatic as mainstream business technology. I used to liken it to my son having to go to a dictionary every time he wanted to say something, and look up the word. After a while, you give up.

Craig Morgan Teicher: Or it’s like a dictionary with only eight words—you have to make your life work with eight words.

One of the big lessons for me with my son is the same lesson that poetry teaches—that language is fluid, and constantly changes, as words are loaded and unloaded with meaning: that meaning is pretty fluid.

So I look at my son’s way of communicating as fluid. It’s not just a yes or no, I want to do this or that. It’s a continuum of trying to express pleasure and displeasure and excitement and beckoning and pushing away. The struggle is to get further away from yes or no and get to all of the things that really make up a life.

For me, as a word person, one of the things that’s so startling about raising Cal is that it’s intensely physical in a way that no other relationship I have had, or imagined, is. I have to act as an extension of his body and his wishes, and sometimes I have to work against his wishes. That’s really hard to describe, and there aren't words for it in our language.

BLOOM: When I read your piece in The New York Times, about reading aloud to Cal, and wondering what he’s thinking, it made me think of an interview I did with British theatre director Stephen Unwin, who has a son who doesn’t speak. Stephen said: ‘I was brought up with language. I had a really old-fashioned English classical education. I’m over-educated, language is everything for me and I’m dealing with a son who has no speech. I love the boy to pieces and I’m grief stricken and that’s not a contradiction, that’s real.’ As a poet, what have you learned from a son who can't engage in formal conversation?

Craig Morgan Teicher: Before Cal was born, and into the beginning of his life, I thought that language was really the way that life happens, and now I see there are many ways. I’m not unhappy that there is a part of my life that exists outside of language. Music is definitely a way that Cal and I transact happiness and feeling.

I’m not a good musician, but I’m a self-taught guitar player, and from the beginning of Cal’s life we’ve made up silly songs together—sometimes with words and sometimes not. That’s a pretty great way of communicating with someone. It’s not precise in the same way that words are.

I think maybe I have enough language in my life that I don’t specifically grieve Cal not having it. I deeply grieve that he doesn’t have a choice to use or not to use words. That’s really painful.

BLOOM: I read your profile of Jesse Ball, the author of the novel Census, which includes a character who has Down syndrome, but as readers we’re not told his diagnosis. And you quote Ball saying something about how it’s impossible to write a true portrait of a person using our culture’s language for disability. Do you find that words impede our understanding of what disability is like?

Craig Morgan Teicher: Definitely. Sometimes Cal and I will lay on the floor next to each other and stare at each other, or make funny noises. There’s a lot of holding hands that you don’t normally do with an 11-year-old, but that stands in for what we might do with words.

One of the things I’ve learned, especially watching my daughter introduce her friends to her brother, is that a lot of people go through their whole life without ever meeting a person with a serious disability.

As a culture, we're a lot more comfortable with less and less precise language to describe the lives of people living with disabilities. That makes me sad and angry—except, of course, I was the same way in that I didn’t know someone with a disability until I became a father.

BLOOM: Something I learned from my son was how important presence is. In our culture, people don’t appreciate the value of presence and being. It’s all about what you can do, and if you can’t do something, you’re stripped of value.

Craig Morgan Teicher: If Cal hears someone he cares about walk into a room, he knows, and it’s not because he’s looking at them. He can feel the room in a way that I certainly have not learned to pay attention to. To him, presence is a huge part of what his life is, and he’s made it a huge part of what my life is. As a person who spent my childhood and youth in my head a lot, living with my son has taught me a lot about the power of just being in the presence of someone else.

BLOOM: How do people around Cal respond to his lack of speech?

Craig Morgan Teicher: He’s a very happy person, a very joyful person, and the people who know him well are generally happy when they’re around him. He gets all the staring and weird confusion from other kids that many disabled kids get. Many grown-ups are afraid, and think they don’t know what to do. The most shocking thing for me has been watching my daughter become aware of the extent to which people stare at us, and how she feels about that.

Kids will stop and stare at Cal, open-mouthed. Some will ask ‘Why’s he in a chair?’ and we open a conversation. Others stare until their parents yank them away, or we stare back. What I want is for Cal to cross a bridge. We’ll say ‘This is Cal,’ and some kids will actually say ‘Hi, I’m whoever.’

BLOOM: I remember when my son was young that I read a lot about how you can prepare for difficult social situations by role-playing responses. For a long time I felt that was my job. But now it really depends on whether I’m in the mood. Sometimes I’m in the mood to educate, and sometimes I’m not.

Craig Morgan Teicher: Sometimes I don’t rise to the occasion at all, and I want to make sure my daughter has that right. BLOOM: Has Cal’s lack of speech influenced the way you write or read poetry?

Craig Morgan Teicher: It definitely has. But poetry has as much informed the way I think about Cal as Cal has informed the way I think about poetry. Something that’s very true about poetry is that a lot of what it is about is the silence that surrounds it. It’s the stuff that’s not in it, but that is to do with it.

The thing we’re not saying that the poem implies, that the poem whispers. Silence is a big part of the world around Cal, and what you learn about silence is that it’s not so quiet and there’s all this stuff moving around in it. That insight is equally true of poetry and of people, and especially of people who don’t use words. Language isn’t the only way of communicating.

BLOOM: In your piece about reading to Cal, you note that he responds with sounds, but you can’t know for sure what meaning he’s taking away. By the end, you seem satisfied that his meaning could be a number of things. It could represent his love of your voice, or his understanding of the emotion it conveys. Or it could be his own unique way of visualizing a character when, as you note, he isn’t able to see colours the way you can. Our culture values speech as a way of demonstrating intellect. But is the meaning that a child who can’t speak, or who may think differently, takes from listening to a book as valuable as the meaning a typical child might be tested on at school?

Craig Morgan Teicher: I don’t think the meaning a typical child might be tested on at school is particularly interesting. As a writer, the last thing I want is for someone to think about writing as a puzzle that you have to solve to get to the right answer.

I think of writing as much more like being in the room with Cal, a reader's presence next to the text, as opposed to anything that resembles testable understanding. What was fun about writing that essay was that reading to Cal had become a way of experiencing his presence and my presence next to a book.

Reading aloud was a way for me to hear the book myself, which was something that I wasn’t good at doing before. I had trouble imagining it in my head. I guess I’ve come to believe, though I can’t verify at all what Cal is getting, that the way he’s interacting is the ideal way. It’s to be present with a book. Certainly my own relationship with books is much more about them as good company, and as people in the room, than about getting the meaning right.

Part of what I do is interpret books in writing. I’m a book critic, but that aspect of what I do is a pretty limited way of thinking about what a relationship to reading can be.

BLOOM: What’s been the greatest joy of raising Cal?

Craig Morgan Teicher: There isn’t any one thing. It’s just him. I’ve been surprised, especially as I’ve written about him more, that I can describe my family as a happy one, and that a lot of families I know that include a child with special needs are happy.

BLOOM: Have you written about disability in your poetry?

Craig Morgan Teicher: It certainly comes up a lot. Cal comes up a lot. I don’t think it’s my place to write specifically about disability. I’m not disabled and I don’t want to speak for others who are. There is a very strong community of poets with disabilities who write all kinds of poems. Beauty is a Verb is one excellent anthology to start with. BLOOM: What do you hope people take away from your writing about Cal?Craig Morgan Teicher: As I’m writing more about Cal I’m trying to figure out who I’m writing to. I don’t want to make someone feel that my way is the way they should do it. I want to supply some language around which people could think about this kind of a parenting journey.

Monday, December 17, 2018

Lisa Drumonde is a registered practical nurse working with children who are hospitalized at Holland Bloorview for rehab after painful bone surgeries or life-changing trauma. She recently won the DAISY award, which recognizes a nurse that uses a strengths-based approach and combines top-notch clinical skills with deep connections with children and families. Lisa Drumonde began work almost 22 years ago at what was then the Bloorview Children’s Hospital. Hammas, 14, pictured above with Lisa, describes her as a nursing "legend."BLOOM: How did you get into the field?

Lisa Drumonde: When I was about 10, my family was ready to go on a trip to Disney when my younger brother didn’t feel well. My mom took him to Emergency, and they discovered a tumour on his lung. That was my first experience around nurses, and it stayed with me. I think being a sibling in that situation gave me empathy toward the siblings of the kids we work with.

After high school I went off to York University to study history. While I was there I got a job at a hospital as a weekend housekeeper. There were a number of students working there. I had a lot of interaction with the patients—who were adults. I really enjoyed being with the patients, and seeing some of the things the nurses did on the unit. I decided to change direction and go into nursing at George Brown.

Lisa Drumonde: Everything led to kids. It was almost my fate. I initially got a job working as a pediatric home nurse at night and on the weekend. Then I was taking a certificate in rehab nursing and I did a placement with Kelly Brewer, the physiotherapist, at what was then the Bloorview Children’s Hospital. I saw they were hiring, and having the pediatric experience enabled me to get the job. BLOOM: You usually work evenings. Do you like that shift?

Lisa Drumonde: I love it! I can get my kids up and out in the morning and make sure everyone’s got their lunches and eaten breakfast. I have two girls—a 12-year-old and a 15-year-old. My older daughter has a chronic illness, and the evening shift gives me the flexibility to accommodate the needs of my family.

Coming to work in the afternoon helps me shift gears and be that other person—not just a mom. I get a lot of gratification from the kids and families I work with, and from being around my peers. BLOOM: How many children do you work with on the evening shift?

Lisa Drumonde: Usually it’s three. I’ll go into the computer and check on their care and what they’ll require, including their medications. We have the evening routine, which is dinner. Some of our kids are at a stage where they need to be walking to meals. I may do range-of-motion exercises with my kids, or showers, or wound care.

Managing pain is a big thing. Something may happen and I need to call the doctor or pharmacy or orthotics. It’s really beneficial when you have the same kids for a few shifts in a row. You get into a really nice rhythm with them. You know exactly what they need, and what motivates them. Consistency is important to families as well.BLOOM: What’s the greatest joy?

Lisa Drumonde: Interacting with the kids. Having a laugh: making them laugh or they make me laugh. It’s the relationship that you build with the kids and families, and the trust. I had one child last week when she first came in, and then I didn’t have her for a week. When I got her again, she’s so much stronger, and able to move from her bed better. Seeing that progression in kids is really rewarding. I love the nurses that I work with, and I enjoy working with the other disciplines too. I take my job seriously, but I like to have fun with it.

BLOOM: That’s the creative part.

Lisa Drumonde: Yes. And I like the teamwork. I feel we’re very strong on the specialized orthopedic and developmental rehab unit (SODR) in regards to having each other’s back, and working together.

BLOOM: What’s the greatest challenge?

Lisa Drumonde: When families are here because their child has been through a traumatic experience. Families are very stressed and trying to cope with what’s happened. Helping to support the family through that is probably the hardest thing, because I want to say and do the right thing to help them.

BLOOM: How do you manage that?

Lisa Drumonde: I feel nurses do a good job of supporting each other. I know my manager is always available to support me, too.BLOOM: What emotions come with the job?

Lisa Drumonde: Mostly joy. I feel very grateful to be working here and to be working with the kids. The parents trust us to take good care of their kids, to get the right meds, and to do the right things to help both child and family. Sometimes there’s sadness. I really feel for some of the families. I have to put up a bit of an emotional wall sometimes, or it can affect you too much.

BLOOM: I remember in our narrative nursing group, which you were in, a number of nurses spoke about times they felt helpless.

Lisa Drumonde: Yes, when children have nerve pain it’s brutal. The medications that can help it usually take a couple of weeks to be fully effective. It’s hard to see a child in so much pain, and even strong analgesics don’t help.

BLOOM: How do you cope with that?

Lisa Drumonde: I talk to my nursing colleagues. I get their advice and their opinions. They may have good suggestions, not only to support me, but in how to help the child. The biggest thing for me is talking to others who understand.

BLOOM: I’ve always felt that nurses, because they spend so much time with our families, have the opportunity to develop close relationships that can give them unique insights.

Lisa Drumonde: With me, being here as long as I have been, I’ve noticed in the last year or two a certain confidence within myself. When I go into a patient room now I feel very comfortable and confident. The families sense this, which is a positive way to start my relationship with them.

BLOOM: What qualities are most important in a nurse?

Lisa Drumonde: Patience, kindness and understanding. Being flexible, but also having the right amount of firmness, too. Time management is important. You need to be innovative and knowledgeable.

BLOOM: How do you innovate?

Lisa Drumonde: We’re seeing more and more kids on the unit who have anxiety. So finding a way where you can help the child to trust you and be comfortable with you. If you need to do a dressing change, finding a way where you can lower their anxiety. It may be doing something silly, or funny or singing. Sometimes iPads are a helpful distraction.

BLOOM: If you could change one thing about children’s rehab, what would it be?

Lisa Drumonde: One thing we talk about on the unit a lot is having more psychological support for our kids who have gone through sudden, traumatic experiences. For example, we see a lot of kids who were involved in a motor vehicle accident, or who have a spinal-cord injury.

BLOOM: What did you think when you heard you’d won the Daisy award?

Lisa Drumonde: I was overwhelmed. I had no idea I’d won it. It all happened on the unit. Julia was there and other upper management people, and the kids and families and the staff. I was given a statue that was carved in Africa. It’s really special. Receiving the Daisy award was a truly meaningful and touching moment in my nursing career.

Thursday, December 6, 2018

Eunice Kang’s music career began at the age of three. Her mother was a professional pianist, so “there was no choice for me not to go into the music field,” she says, laughing. Eunice has a university degree in violin performance from South Korea, and spent her 20s travelling the world as a professional violinist. Eunice came to Canada to study music therapy at Wilfrid Laurier University and volunteered at Holland Bloorview while she was a student. She later did an internship here and was hired in 2011. Eunice is a registered psychotherapist, neurology music therapy fellow, and accredited music therapist. She brings a unique perspective to the families she works with because her son Nathan developed seizures at age two.

BLOOM: How did you get into the field?

Eunice Kang: Through my whole life I’ve played the piano and the violin. After performing in numerous concerts during my 20s, I wondered if there was another field I could dedicate myself to, where I would feel more valuable. I love working with children and that’s when I thought about music therapy.

BLOOM: What is a typical day like?

Eunice Kang: During the week I mostly see inpatients where the goal is to help them regain their abilities, or enhance their existing ability. Music is a safe environment. Most children like music, so it can have a life-changing impact on them. We have many traditional instruments and new music technologies like Soundbeam, which uses sensors to detect movement and translate it into sounds, and the virtual music instrument. Through music therapy we help children to improve physical and mental health or to better cope emotionally with their hospitalization and loss of abilities. BLOOM: How would you support their emotional wellbeing?

Eunice Kang: Often it’s by making our own music. We may use technologies like GarageBand and they’ll write their own song, or we may pick famous music and change the words to reflect their emotions and stories.

BLOOM: What about your work with outpatients?

Eunice Kang: We see a lot of children with autism who are outpatients. They may be working on improving communication or self-regulation skills. They may be learning how to play the piano, violin, guitar, ukulele, drums or shakers with individualized education plans.

BLOOM: Why is music important to children with disabilities?

Eunice Kang: It offers a safe, rewarding place where children can be themselves. In music therapy, you don’t need any prerequisite skills. As music is non-verbal, we can communicate and express ourselves more easily through it. That motivates our children to enhance their skills.

BLOOM: What are the joys of your job?

Eunice Kang: I especially love to work with babies and young children. I also love working with teenagers and preteens. But the babies are pure angels. When we’re doing therapy, I don’t feel like I’m doing therapy. I’m enjoying them, moment to moment, and I can feel joy. When clients make progress—it doesn’t matter if it’s slow or fast—it boosts my self-confidence. I remember one family who came and during their child’s assessment, the mother started to cry. I asked her why she was crying, and she said she’d never heard her son say his name. He said it many times in that session. So there are breakthroughs.

BLOOM: What is the greatest challenge?

Eunice Kang: Sometimes controlling my emotions. My son’s seizures started at age two. Sometimes I see people going through what we went through and hard moments for our parents bring up my own memories and emotions.

BLOOM: Can you tell us a little bit about your son Nathan?

Eunice Kang: He was hospitalized for three months due to a high fever and then the seizures started. They are intractable. He lost the ability to stand, walk and talk. It’s a disaster to see your own child lose everything. My son is eight now, and I’m better. Time heals me, too.

BLOOM: Was there anything you found helped you cope with your son’s medical condition that might be useful to other parents?

Eunice Kang: The best thing is direct family support. Emotional support is important, and Andrea Lamont here has done lots of therapy with me. I’d say the reason I survived was because of Andrea’s support. When something like this happens, it’s best to open up to someone you trust and talk about it, rather than hide. Some of the parents here who know my situation have also been very helpful in my life.

When I started, I didn’t think I would have a special-needs child. Now that I do, I have lots of support from my managers and coordinators. Everyone understands my situation, and they make everything easy for me to work. The Canadian health-care system is so much better than in Korea, so I feel really blessed that Nathan was born here. BLOOM: How has your own experience parenting a child with disabilities influenced your work?

Eunice Kang: My attitude has changed. When I was a beginning music therapist I didn’t really take work home with me. But now I take things more seriously. Now there’s no boundary between work and home, but more of a continuation. I also find that I think about the child and his or her environment more inclusively. I’m not just thinking about music therapy. I will check to make sure families have all of the available resources in other areas of their life.BLOOM: What have you learned through patients?

Eunice Kang: I really admire their courage and how brave they are. I’m often surprised at how families will advocate and protest to protect their child. They’re very involved in their child’s care.

BLOOM: What work here are you most proud of?

Eunice Kang:The Baby and Me program, because I love helping parents and baby to bond together, and to help with parent’s emotional challenges. I also love Holland Bloorview Rocks. The children attend about 10 or 11 practices and then we put on a concert. I will never forget the joy and excitement on their faces, and their attitudes when they’re on stage. They are pure rock stars. This program also supports our music therapy program, so the children are proud to know that they’re helping other children.

Friday, November 30, 2018

Nikoletta Erdelyi is a project coordinator at York University who works with academic advisors in all faculties to improve the way they support students. She’s also a writer, actress and artist. One of her art pieces is in an exhibit called 18 | eighteen at Holland Bloorview. It pairs the grey, sterile X-rays of her childhood with a whimsical poem about her vibrant life outside the hospital. Befriending Skeletons is part of an exhibit in which young adults depict moving from pediatric to adult care as a person with a disability. The exhibit was curated at the Koffler Centre of the Arts and will honour the International Day of Persons with Disabilities on Dec. 3. Please visit the hallway on the hospital’s first floor between 3-5 p.m. on Monday. BLOOM: How did you get the idea to mix X-ray images of you in childhood with a poem about the kind of girl you were?

Nikoletta Erdelyi: I’ve been writing for as long as I can remember. A big part of my childhood involved medical appointments and surgeries and being in the hospital. When you’re a child, the hospital is an absurd place. The scents, the sounds and the words you don’t understand. It’s a petrifying feeling. The X-ray room is especially daunting because it’s dark, the table you lie on is cold, and there are very scary images of your bones. You know you’re different from the rest of your peers. I wanted to combine that feeling of the absurd with something a bit more fun and whimsical. BLOOM: It’s very powerful because it contrasts your memories of the ‘smell of the operating room’ and ‘masked strangers who lull you to sleep,’ with a spunky girl who insists her cast be yellow to match her princess dress.

Nikoletta Erdelyi: That was exactly my intention. Those images of the X-ray and operating rooms are still very vivid to me. I still have dreams about that time in hospital. As a child, you don’t understand what they’re going to do to you. It really is terrifying and a lot of it can feel like a horror film. Even though surgeons are wonderful human beings and accomplish fantastic results that improve people's lives, as a child it's difficult to comprehend that you're viewed through a medical lens.

BLOOM: And the clinical X-rays don’t in any way match your personality as a girl.

Nikoletta Erdelyi: That’s what I was going for. When you’re a person who strays from most people physically, others have perceptions about you and what your life is like. If an average person were to view those X-rays, they might perceive my life as difficult, dull and even painful. I was hoping to capture with the poetry that I’m someone who is full of life, who has hopes and dreams, and who is a happy person, a full person.

BLOOM: Do you have any advice for how health professionals could make children's hospital experience less frightening?

Nikoletta Erdelyi: I was born in Hungary, and a lot of my surgeries and hospitalizations took place there. The hospitals were in old buildings and they didn’t have funding for things like child-life specialists or family-centred care. When I moved here and was at Holland Bloorview and SickKids, it was no longer as terrifying. There were bright open spaces and Mickey Mouse on the wall and everything was so personalized. I remember at SickKids they had me choose which flavour I wanted in my anesthetic mask. Little things like that made a big difference.

BLOOM: It seems like most of your medical intervention happened as a child. In your poem, when we reach the end, it is focused on going to university, moving to the city, getting a job and falling in love. We don’t hear about any more surgeries or hospital stays.

Nikoletta Erdelyi: That’s correct. Most of my surgeries happened as a child. My spine was a big concern, but it stopped shifting when I was a teenager, so I no longer needed to come for these regular appointments. One of my biggest fears was having spine surgery.

BLOOM: What was your move into adulthood like then?

Nikoletta Erdelyi: Of course I was apprehensive. To leap into adulthood is scary for anyone. But I had so many strong supports behind me I was ready for what was next. I went to university, and within a year I moved out to my own apartment. I dated. I worked.

For me, the transition was pretty smooth because of the support systems I had at Holland Bloorview and with my friends and family. By the time I was 17 I became comfortable with the fact that I was different. I do use a wheelchair, but that’s okay. Ultimately, what matters the most is my resilience and passion. That was me coming to terms with the fact that I didn’t need footsteps because I had something more powerful—my wheelchair is my wings.

BLOOM: Yes, that’s a beautiful image at the end of your poem of you taking off. I know you’ve written a book. Can you tell us about that?

Nikoletta Erdelyi: It’s called The Electronic Sticky Notes That Saved My Life. It’s a story about my life when I was 19. In a lot of ways it’s about the transition to adulthood, about becoming yourself and accepting and finding yourself. At the time, I’d gone through a very difficult breakup. It’s about how I rebuilt myself and moved on from that and came to terms with my femininity as a woman who uses a wheelchair. I won a grant from the Ontario Arts Council to write it but the most challenging thing is finding an agent. So it’s a work in progress.

BLOOM: I read that you performed in a play called Borne that was directed by Judith Thompson, who also wrote a play called RARE about living with Down syndrome.

Nikoletta Erdelyi: Yes. Borne was about nine different people who use wheelchairs. That was an exciting time, talking about my experiences growing up differently and how I became the person I am.

I’ve written a one-person play called Ghost Tales that I’ll be performing at Soulpepper next year.

BLOOM: Wow! What is it about?

Nikoletta Erdelyi: It captures some of my lived experiences in romantic love and other important milestones of my mid-20s. It explores heavy topics, including tokenism, affirmative action, societal concepts of love, and the moral pedestal that people with disabilities are often placed on. I want to capture the idea that we are all capable of good and evil. I'm all about making peace with absurdity, and can't wait to bring this piece to the stage next spring!

BLOOM: What was creating Befriending Skeletons like for you?

Nikoletta Erdelyi: It was a very cathartic experience for me. It was like taking skeletons out of the closet, literally. I had found those X-ray images in my mom’s closet, and I had no idea they were there. It helped me to put an end to that chapter in my life and realize how far I’ve come.

BLOOM: What do you most love about writing?

Nikoletta Erdelyi: I think it transcends day-to-day language and the way we speak. Through poetry especially we can capture universal emotions. There’s a type of magic in that for me.

BLOOM: What advice would you give parents and professionals who support youth with disabilities?

Nikoletta Erdelyi: I would encourage them to promote independence and autonomy, because so often when you have a disability you live with your parents and health professionals want to be there every step of the way to support you. But at the same time, it’s important to find yourself, and figure out what you want outside of those expectations and pressures.

One thing that helped me was I went to all of my medical appointments alone since I was 15. It helped me become a strong advocate and to figure out what I still needed to learn. I would encourage parents and professionals to listen and to encourage clients to speak up for themselves.

Monday, November 26, 2018

Lewis Tolensky has been taking his son Seth swimming at Holland Bloorview’s Snoezelen pool since he was one.

When the lights are dimmed, the small, heated therapy pool becomes a soothing environment where large balls bob in the water and change colour, a kaleidoscope of butterflies is projected on the wall, and classical music plays.

Lewis is part of an informal group of dads who bring their kids at the same time.

“They used to come at different times, but then they all ended up booking the same time spot,” says Lifeguard Michaela Jones. “Conversations sparked about sports and what’s happening at home and resources for their kids.”

“It makes you feel like you’re part of a little community,” Lewis says. “We all have different situations, but there’s a lot of shared experience you can learn from. School is always a big topic. But we don’t just talk about disability. We talk about football and the news of the day and politics. It feels very normal and natural and nice to connect with them.”

The dads’ group formed organically as the fathers got to know each other. “We bounce ideas off each other in terms of how we handle certain scenarios,” says Pablo Pommells. He’s been bringing his nine-year-old daughter Ayla, who has autism, since she was two.

“A dad might have a question about sleeping, or about using a certain product,” Pablo says. “It’s nice to know that others can relate.

“A lot of fathers don’t really engage with their children with disabilities—that’s why there’s a high divorce rate. It’s important to put it out there to fathers that it’s okay to have questions and doubts about your child, and you should never deny things. Everybody has something to contribute.”

Holland Bloorview’s Snoezelen pool and room are open to children and adults with any type of disability. You don’t need to be a Holland Bloorview client to access the pool.

A 45-minute session costs $14.37 for parent and child.

Lewis says the accessibility of the pool becomes more important as Seth, who is nine, grows. “It’s a comfortable place where it’s easy to transfer Seth onto the shower chair and into the pool and the warm temperature combines for a great experience for him and for me,” Lewis says. “As Seth gets bigger, going everywhere else gets more complicated, but Bloorview stays the same.”

Wednesday, November 21, 2018

Vanessa Williams, 18, has spent three years on the Children’s Council at the Hospital for Sick Children and last year she chaired the group. SickKids has always been a part of Vanessa’s life, as her older brother Daniel has sickle cell anemia—a condition in which a person’s red blood cells are shaped differently. This makes it easy for the cells to stick together and block off small blood vessels, causing pain and organ damage.

As a teenager, Vanessa became a patient at SickKids, too, after she was diagnosed with post-traumatic stress disorder, anxiety and panic disorder. We spoke about what it was like to grow up as the sibling of a child with a chronic, sometimes life-threatening, condition.

BLOOM: Tell us about how you were first exposed to SickKids?

Vanessa Williams: When my brother Daniel was six months old he was diagnosed with sickle cell anemia. So when I was born, SickKids was my second home. When Daniel was younger, he was in and out of the hospital once every three months. Initially, I never thought anything of it—it was the only life I knew. I used to look forward to when he had his annual physical, because it meant I got to take the day off school, and could roam around the hospital. It wasn’t till I was 12 or 13 that I started to realize how severe his illness was.

BLOOM: That it was life-threatening.

Vanessa Williams: Yes, in 2005 he fell ill and was on life support at SickKids. That’s where my anxiety started to stem from. I recognized that the life I was leading wasn’t normal to my peers.

When my brother was on life support, my mom didn’t want me to see him in that state. But when he was on a regular floor, it was a very emotional time for me and my whole family. His flare-ups could happen out of the blue. It forced me to grow up at a very young age.

BLOOM: What was the greatest challenge as a sibling?

Vanessa Williams: Just talking to peers about it, and feeling like I was alone outside of my house, and even with some extended family members. They didn’t understand it. People on the outside think they understand, but you don’t know how much a chronic illness can impact a person until you’re in that position. The other kids I knew didn’t have a sibling with a chronic illness.

BLOOM: So I guess if you would tell your friends about what was happening, but they probably couldn’t relate in any way?

Vanessa Williams: For the most part, I usually got a reaction of ‘I feel so bad for you.’ But I didn’t necessarily want a pity party, I just wanted to be supported. No one had that relatability of understanding, without me having to explain every little aspect. There were a few individuals in my elementary school years who were great supports. Most of my teachers were very understanding. But for the most part, no one understood what I was going through.

BLOOM: We have sibling programs at Holland Bloorview and there is a group called Young Carers that runs programs for children who support any family member with an illness or disability. Have you ever participated in those?

Vanessa Williams: No, I haven’t. I feel that’s something that would be a huge success at SickKids. I remember at one of our council meetings a sibling stressed that she wanted support at a time of crisis when her sister was in the hospital. They don’t receive it outside of their inner circle.

My mom always used to say that when my brother was in hospital she tried to split time between him and me so that I didn’t feel like I’m left out or not loved. But when I was younger it bothered me. I thought everyone cared for him more than me.

BLOOM: That’s a natural feeling. In studies of siblings, a common emotion is resentment, because it seems like the sun revolves around the ill child. And even though the sibling knows her brother or sister has extra needs, you still feel left out.

Vanessa Williams: I’d like to see more support groups for people who are facing the same illness, whether it’s the kid with the chronic illness or the sibling or the parents.

BLOOM: How did you become a patient at SickKids?

Vanessa Williams: When I was 13 I was seen at Centenary Hospital for my anxiety. It started in Grade 7 when I was feeling nauseous all the time. I’d feel scared to go to school, and I had a horrific panic attack at school. I also had dizziness and was feeling overall anxious. When I was 16 I became an outpatient at the teen clinic at SickKids.

BLOOM: What treatments did you find most helpful?

Vanessa Williams: I learned techniques in cognitive behaviour therapy, as well as talking it out. I’d use grounding techniques to reassure myself that my symptoms were just the anxiety, and it would pass after a certain period of time. Another method was being able to distract myself from how I’m feeling. For example, when I was experiencing an anxiety attack my brother would start talking about something aside from that, and that would help. I also had a grounding rock I used to use.

Other stuff that helped was doing extra-curricular activities. In an odd way, doing things that initially provoked my anxiety, like being a part of the Children’s Council.

At the Children’s Council I was surrounded by other individuals who understood my experience. During meetings someone would say something and I’d say ‘Oh gosh, I’ve felt that all the time, but I thought I was the only one who felt that way.’

Last year I got involved in a community youth council. I’m interested in politics, and we got to come up with ideas for initiatives in our community. The doctor I was seeing at the time said I had to do stuff that I enjoyed.BLOOM: What advice would you give to another sibling of a child with a chronic illness?

Vanessa Williams: Make sure that you have some sort of concrete support outside of your family and friends: a therapist or a community leader who can give you concrete advice. It needs to be someone who understands your experience and is older than you. BLOOM: It sounds like you’re saying you need specialized support?

Vanessa Williams: Yes. Every sibling of a patient who has a chronic illness needs it. And we also need more supports for the person who has the chronic illness. Having someone who is older, who has the same illness, and can talk the younger person through it and be a mentor.

BLOOM: Is there a project you were involved with on the Children’s Council that you’re most proud of?

Vanessa Williams: During RBC's Make 150 Count campaign they reached out to our council and gave us some boxes with $150 in them. We broke into groups and came up with how we wanted to Make 150 Count through the hospital. My group gave out Timbits on the floors to the nurses. Another group gave out pillows and blankets to people in the emergency room. We were also part of a video to create a Canadian Children’s Charter. This year, I was able to facilitate a group for the SickKids’ GetLoud walk and we raised $1,500 in a short period of time.

BLOOM: That’s great. What do you hope to do after high school?

Vanessa Williams: I want to go to university. I’m leaning towards University of Toronto's VIC ONE program. It focuses on eight different majors and has small class sizes, which I need. It reminds me of the alternative school I go to now.

BLOOM: What would you like to do eventually?

Vanessa Williams: I know whatever I do will be along the lines of what I’m doing now—helping others. It may be within pediatric care. I’m very passionate about that. I’m also really interested in public policy. A goal of mine is to be part of municipal politics. I love Toronto. As a municipal leader I want to be able to help those within the city.

BLOOM: A number of studies have shown racial inequities in the way people receive health care. Has race ever been an issue for you in the care you or your brother received?

Vanessa Williams: No. I know a lot of people complain about reaching roadblocks as a result of their sexuality or race.BLOOM: Or disability.

Vanessa Williams: Sickle cell anemia only impacts black people and other visible minorities and it was never an issue for us. My mother was a personal support worker in palliative care, and she was always very hands on with my brother’s care. She made sure he received the best care.

In my case when I was suffering from mental illness, I never felt like I was getting less care than others. SickKids has always been a safe place for me. I knew that no matter what was happening with my brother, or myself, we were receiving the best care possible.

BLOOM: How are you a different person because of your experiences with Daniel?

Vanessa Williams: First and foremost, I feel like I’m more mature than a lot of kids my age. And I have a very different perspective on life, because my brother has faced life-and-death situations. I cherish every moment. BLOOM: How is your brother doing now?

Vanessa Williams: He’s doing well. Since he’s gotten older his condition hasn’t been as severe as it was when he was younger. He’s currently at Centennial College and he’s going to go to Ryerson for social work. He always said he wanted to do political science at U of T and then days before the applications were due he changed his mind. ‘You know what?’ he said, ‘I want to help other kids who have faced what I’ve faced.’

Unhappiness and worry in children with disabilities is the most significant predictor of negative impact on family wellbeing—regardless of diagnosis—according to a study published last month in the Journal of Intellectual Disability Research.

Over 200 Canadian parents of children with disabilities like autism, cerebral palsy and intellectual disability filled out surveys about their child’s function, behaviour and emotions, and how it influenced the family. The children, in Alberta, Ontario and Quebec, were aged four to 13.

Despite parent perceptions that their children had more serious problems in areas like peer relationships or inattention, “it is children’s worries, fearfulness and general unhappiness that is most impactful on the family’s ability to maintain their social, financial and personal well-being,” the authors write.

Parents assessed negative impacts of the disability on the family related to “increased time and financial demands” and “disruptions in family routines, social isolation and decreased emotional well-being.”

BLOOM interviewed Lucy Lach, an associate professor in the School of Social Work at McGill University, who co-authored the study with Dr. Emily Gardiner at the University of British Columbia. Kids Brain Health Network funded Emily's postdoctoral research. Emily used a data set developed by Parenting Matters, a team studying what it means to parent kids with disabilities. Parenting Matters was funded by the Canadian Institutes of Health Research and Holland Bloorview Kids Rehabilitation Hospital Foundation.

BLOOM: Why was there a need for this study?

Lucy Lach: Emily, who is the lead investigator, is interested in tackling this issue of the value of categorical vs. non-categorical research. Categorical research is diagnosis-specific, and non-categorical research cuts across diagnoses. From a research perspective, there’s an ethical dilemma about funding being allocated only to specific disorders.

There’s a whole industry of conferences and journals dedicated to autism and cerebral palsy and epilepsy. But other disorders—particularly as we get more fine-tuned in locating genetic disorders—are so tiny, that their voices get excluded.

Non-categorical research allows parents to find shared experiences—not because of their child’s diagnosis—but because of similar functional impairments. This is research that can benefit all families.

BLOOM: What were the key results?

Lucy Lach: There were three key variables that came out as significant predictors of how negatively parents appraise the impact of a child’s disability on the family. The most significant was higher emotional symptoms. These refer to fearfulness, worry, sadness and withdrawal. The other two predictors were lower social skills and lower practical, daily-living skills.

BLOOM: What kind of emotional problems were you looking at?

Lucy Lach: These are internalizing behaviours like fearfulness, sadness and being downhearted. They’re often invisible. With externalizing behaviours like aggression, conduct problems and combativeness, it’s something very physical, and you know it when you see it.

A child who is more withdrawn, or fearful or sad, may be interpreted as a child with a quiet nature, or a child with a lack of motivation. They’re not disruptive, and they’re less likely to come to the attention of teachers. Unless a parent is worried about their child’s emotional state, it’s not likely that clinicians will pick up on it.

The results are far-reaching because they suggest that when a child is unhappy, not only is it the worst feeling for the parent, but it has a negative impact on the entire family.

BLOOM: Was that a surprise?

Lucy Lach: I would not have predicted this result. I would have thought that a child’s aggressive behaviour, rather than emotional problems, would have the highest degree of negative impact. People don’t realize how important a child’s emotional life is.

I remember when I was doing my work with children with epilepsy, we were paying attention to aggression, because it’s so disruptive in the classroom and with peers and family. But we weren’t at all paying attention to fearfulness and sadness. BLOOM: What can clinicians take from this?

Lucy Lach: I think the assessment of fearfulness and sadness and worry is really important in clinical practice. We know from the literature that parents are much better judges of their child’s externalizing behaviour.

Kids themselves are a better judge of their internal state because they’re more tuned into it. So clinicians need to use measures that include emotional symptoms and—to the extent possible—have the child complete them. BLOOM: So it would be important for children who are non-verbal to have another way to identify their feelings?

Lucy Lach: I used to use cards with faces on them, and ask kids to point to the one that shows how you feel inside, how you feel in your heart.

If you want to help families be less negative in their appraisal of the impact of their child’s disability, develop programs that target a child’s emotional well-being and social skills.

BLOOM: We know that parents of children with disabilities have higher rates of depression and anxiety. Does the study in any way tie a child’s emotional problems to a parent’s emotional state?

Lucy Lach: No, we can’t extrapolate that. We could do a separate study with the same data to look at whether a child’s emotional problems are predictive of parent depression and anxiety. BLOOM: The study notes that children’s functioning within a diagnosis often varies greatly. And that it’s better to target interventions to similar functional problems across diagnoses. This fits with a move here at Holland Bloorview to ‘personalize pathways,’ so that a child receives services to meet their needs vs. their diagnosis. But that’s not the way children’s rehab has traditionally been set up, is it?

Lucy Lach: Absolutely not. That will be hard. We have clinics that are specific to diagnoses, journals specific to diagnoses and conferences specific to diagnoses. The world is structured by diagnosis.

BLOOM: In the section on limitations of your study, it says that the Family Impact of Childhood Disability Scale you used has positive and negative subscales, but this study focused on negative experiences. So, in addition to the negative impact of a disability on a family, there are also items looking at positive impact. Is there anything positive parents can take from the study?

Lucy Lach: Yes. The idea that parents simultaneously hang on to positive and negative aspects of the impact. We need to inquire, and help families build, their narrative around how having a child with a disability has had a positive impact on their family. It’s not a narrative that they’re invited in to frequently. We should be asking the question: ‘Tell me about how your child’s disability has had a positive impact on the family.’

Tuesday, November 13, 2018

Have you seen the new ad by the Canadian Down Syndrome Society? Young adults with Down syndrome dress up as pandas, polar bears and lions to suggest that, like these endangered species, their well-being too is threatened.At endangeredsyndrome.com, the group shares why their existence is precarious: births are falling, 65 per cent are unemployed, and one in four live in poverty. They note that animal welfare organizations have 90 per cent more funding than Down syndrome organizations in North America.You can read the group's letter to the IUCN Global Species Programme Red List Unit. Currently, there are almost twice as many hands-downs vs. hands-ups on the ad at YouTube, and one Toronto woman with Down syndrome criticized the ad for comparing people to animals.I personally like the ad. I think it makes a powerful statement by reminding us that we're willing to devote more resources to endangered animals than to human beings.

I also think that the ad plays, in a clever way, on the stigma that people with disabilities are less than human. Many viewers will not want to be reminded that, according to research, we carry this kind of implicit bias at a subconscious level. Perhaps that is where much of the discomfort with the ad stems.I recognize at least two of the actors from the play RARE, which was part of the Toronto Fringe Festival in 2012, and starred nine actors with Down syndrome telling their stories. One is Krystal Nausbaum (photo above), a former BLOOM role model.

Krystal and a number of the RARE actors came to Holland Bloorview for a BLOOM speaker night about the play and, during the discussion, spoke about their concerns with prenatal testing. These are people who speak their mind on a number of issues. They are not simply mouthpieces for the Canadian Down Syndrome Society. I find the ad's costumes beautiful and unique. They make me think of the beauty and value of diversity.The ad directs people to the website to sign a petition. I was disappointed when I got there that there was, in fact, no petition. What did you think of the ad? Post a comment below!

Thursday, November 8, 2018

By Louise KinrossThe other day I saw the image above on social media and clicked on I draw childhood cancer, a Facebook page run by Angus Olsen. Angus, who lives in Australia, is trained in animation and began drawing his experiences when his daughter Jane was diagnosed with an aggressive cancer in 2016 at age 2. “It was a way to visualize the unspeakable,” he says. Since then, parents of children with cancer worldwide have written to say his illustrations make them feel less alone. He’s now making comics to help explain procedures, like inserting a nasogastric (NG) tube, to preschoolers. These will help parents, child-life specialists and other professionals reduce anxiety in hospitalized children. We spoke about the role of drawing at his daughter's bedside, where he lived for months.BLOOM: When did you first start drawing about Jane’s experience as a cancer patient?

Angus Olsen: I was living with her in hospital in 2016 when she was doing some heavy chemotherapy, and her tumour grew rapidly—it did the opposite to what you expect them to do. It became quite serious. I was extremely lonely, and people kept asking me questions I didn’t know how to answer. So I started to draw a comic called Jane to explain how lonely it was, and to explain situations that you can’t quite explain in words. My wife had been living with Jane until she came down with flu, and then we swapped. BLOOM: Did you draw on a daily basis?

Angus Olsen: I kind of drew when I felt like it. I did a lot of sitting, staring at Jane’s numbers, and hoping they’d go up. It wasn’t just in her hospital room, but in the oncology clinic where she received chemo. One day, for some reason, she wanted to fly, so I drew her as a pilot flying a plane (see below). Originally I was drawing for myself, but then I put them on Facebook. It was to try to explain to people ‘This is what it’s like.’ Then I joined a couple of pages dedicated to dads of children with cancer and started to make friends. Some of the dads had daughters who were at the same stage of treatment. Even though cancer is very individual, and everyone is different, they were very helpful because I could ask ‘Is this normal?’ Cancer throws you in the deep end. While your child is doing treatment you feel like you’re abusing your child. You know it’s for their sake, and you just hope on the other side that they come out close to normal. As I became friends with other cancer dads, there were little things that impressed me about their kids. The first child I drew like a warrior on a horse, because she was remarkable in how she continued to have a life despite what was going on. It started off with me asking these dads if they’d like me to have a crack at drawing their child. Rather than send me photos, they would have me go through their Facebook page so that I could see what the child looked like disease-free. Especially for some of the children who had passed away, I wanted to show what the child looks like free of cancer. Because in reality, the children who die are finally free of it. BLOOM: Parents often feel helpless in hospital when their kids are going through these treatments. Did drawing provide a useful distraction or a way of thinking differently about what was happening?

Angus Olsen: It was a way to visualize the unspeakable. It helped me, but I guess I don’t know how to explain it. I know now that I wouldn’t remember anything that happened after the trauma if I hadn’t drawn it. It felt like it needed to be done—to explain the unspeakable to people and myself. My most recent art is about placing an NG tube. For a long time when I was in hospital, there was nothing about NG tubes. I didn’t know why I was ramming this tube down my child. I thought maybe there were ways I could be practically helpful to other dads of kids with cancer, by giving them something visual that explains why something like an NG tube is important. I only posted that the other day, and the reaction to it is shocking to me. It’s had more than 70,000 views. BLOOM: Parents are often asked to hold their kids down for these procedures, and it’s incredibly traumatizing.

Angus Olsen: It feels abusive. You feel like you’re abusing your child. Yet you know it has to be you, it can’t be a stranger doing it. At least that’s how I felt. That was really rough on me. There were lots of other things, too. Like the bandage on the dressing on the child’s NG tube can tear their cheeks off. The actual insertion is quite quick, but the dressing change can take a long time and cause a lot of pain. When Jane’s was finally taken it out, she’d had it for more than a year. Some children vomit them up, and are irritated by it the entire time. BLOOM: When you talk about the child’s cheek getting ripped—wouldn’t they have come up with some kind of adhesive to prevent that by now?

Angus Olsen: There’s a lot of technique involved, but sooner or later, the child’s cheek gets worn down, and they run out of skin. And because children are children, and play, sometimes they bump or rub into something, and it tears off. The nurse doing it is very nervous, too. It’s very traumatic on nurses. BLOOM: That’s what we found in our narrative group for inpatient nurses—that clinicians can have feelings of helplessness and grief when they aren't able to prevent suffering, in the same way that parents do.

Angus Olsen: If the nurse is a new nurse, if they’re fresh at this, you’re a parent comforting a nurse. It’s an intensely personal relationship. Even though it’s the nurse’s job, it’s incredibly traumatic on them. I had one male nurse at the local hospital say that Jane’s case was the most traumatic thing he’d seen in his life, and it was the only time he’d ever cried in clinic. They’re all clearly impacted by what they do, but they keep going. I have nothing but praise for nurses. BLOOM: Did you ever make mental notes of interactions with staff you found extremely helpful, or not helpful, in order to later illustrate them?

Angus Olsen: I’m pretty forgiving when it comes to the clinicians. I know they’re human. It’s really a struggle for me to watch a new nurse trying to grapple with what they’ve got to do. You don’t want your child to be the experiment to learn what they’re doing, but you know they’re going to help thousands of children. I’ve never come across a bad interaction with a clinician. BLOOM: Have you thought of doing a graphic novel?

Angus Olsen: I’ve done graphic novels in the past. Facebook is kind of like a sound bite. People can see an image, interact with it and move on. You can pack a lot into an image, and have it received by many people. The distribution of a graphic novel I don’t think is as wide. For example, the comic about the NG tube is only eight frames, so you can swipe through it with your child sitting on the bed. I’m looking for a short impression, something that hits someone in the heart and they say ‘Yes, yes, this is me.’ In the future I’d like to draw all of the different childhood cancers. BLOOM: Did your images have an impact on Jane, or was she too young at the time? Your series about the NG tube could be used by child life specialists to prepare kids.

BLOOM: Were there any downsides to your drawing? I’m thinking of an interview I did with a dad of a toddler with type 1 diabetes. He was a filmmaker, and when his daughter was diagnosed, he began filming. But at a certain point, he realized he was hiding behind the camera, because he was so afraid of making a mistake with his daughter’s treatment.

Angus Olsen: For me, the downside of this drawing is that these children do die. It’s actually quite a lot of emotion. I’ve had to wipe tears off my iPad at times. It impacts me in ways I didn’t realize it would. Parents of deceased children from all over the world message me to see if I’ll do their child’s portrait. I’ve had to stop doing that, and focus on the work with a broader impact on cancer, so it’s useful to thousands of people. It’s all about using your gifts in the most useful way. BLOOM: How is Jane?

Angus Olsen: She’s been in remission since 2017. She’s five, and starting school. She’s doing very well, but she’s still having a lot of physio because her cancer made a mess of her legs. So she’s learning how to walk properly and we’re training her to develop her legs. The scenario they gave us was that she’d either pass away, or be on a bag for the rest of her life. The fact that we came out with a relatively healthy child when we were dealing with the reality, in hospital, that she could die, was very, very fortunate. BLOOM: It must be surreal to have had such an extreme experience.

Angus Olsen: It is. You know that comic of me sitting staring at a blank wall? Cancer parents understand that image. Very recently, Michael Bublé’s been talking about his struggle with what’s been happening to his son. And he says things like ‘I can’t talk about it. I can’t explain it. I don’t have words for it.’ I understand that. We cancer dads understand this poor guy is riding our world. Even though his child is in remission, you don’t go back.BLOOM: You mentioned that the other parents living in hospital were primarily moms. Was that isolating?

Angus Olsen: My wife made a lot of friends because it’s usually mothers living there. Yes, I’m a very private person, and I don’t do well with counselling and things like that. I found the Facebook groups for dads far more helpful than talking to a parent in person. Our daughter’s social worker was invaluable to me, and certain nurses were very comforting. Her surgeon was very good to me as well. So I did have people. But with the urgency of what was happening, and the reality that she could die today, it was too much. I couldn’t leave her bedside to sit down with another parent.

"A young Chinese girl and her grandpa navigate life's challenges and joys in a small neighourhood [known as a hutong] of Beijing. In this graphic-short story collection, the author introduces readers to Yu'er, a girl with an unspecified physical disability that limits her mobility, and her loving grandfather."The first story opens with her dream of becoming a champion swimmer and a belief strong enough to carry her above her naysayers. From there, readers meet a boy who helps her fight off bullies, encounter the fantastical properties of an old mailbox, and finish by witnessing Yu'er's reconciliation with a grumpy neighbour."The Lerner Publishing Group had BLOOM's questions translated into Chinese, so that Nie Jun could answer them. His responses were then translated back into English. My Beijing is Nie Jun's first book published in English. We are thrilled to bring you his words.

BLOOM: How did you get the idea to include a character with a disability?Nie Jun: In this book, Yu'er is very brave and self-confident. Her biggest difficulty in achieving her dream is her disability. But such a situation can make more people identify with her inner confidence and optimism, and also make the relationship [between] her and her grandpa warmer and more dramatic.BLOOM: Is Yu'er based on a real person?Nie Jun: When I was a child, I lived in a large courtyard house where many families lived. There were many children jumping up and down on the colourful roof. There was a child with physical disabilities in the neighbourhood. I remember that her mother used to take her to the street to sell small groceries. Her mother usually hid somewhere far from her and watched.

At that time, we often tried to tease the girl and deliberately anger her. Looking back now, I think her mother was training her to survive. In contrast, we so-called normal children were doing some boring things while she had already learned to face life. This memory affected my understanding of Yu'er.BLOOM: The theme of the injustice of exclusion comes out in your book—whether Yu'er is excluded from taking swimming lessons, or the butterfly's wing is ripped off by the bullies, or Pumpkin can't get the art buyer to see the value of his work. Did you want readers to see the fragility in all of life?Nie Jun: There are many injustices between people. Especially when it comes to a weak person, the strong group will psychologically exclude or even expel them. This is human nature.

Based on this view, I prefer to show a peaceful way of getting along in the story. People don't show a deliberate pity or give preferential treatment to Yu'er. They don't regard her differently from others. This way of getting along makes Yu'er feel happy and makes her heart sunnier.

I also hope that everyone can see a kind of reconciliation in the story. Yu'er's beautiful swimming makes the children who once laughed at her exclaim with admiration. Yu'er is not sad because the children bully her, but she cries for the broken wings of a butterfly. Although Pumpkin can't get the art buyer to take his work, in Yu'er's eyes, he is greater than any master of art. He finds a true respect.BLOOM: Grandpa is the hero of the story. He has endless imagination and sees the good in everyone. In Western culture, seniors are often devalued. Why did you want the hero of the story to be a senior?Nie Jun: Grandpa is a typical old Beijing native, warm, kind, and humorous. In a Chinese family, the seniors are more willing to share their children's pressures in life, such as caring for grandchildren. This can also reduce the loneliness of the seniors. This kind of relationship makes the grandparents and the grandchildren dependent on each other, which is very normal in a Chinese family.

For example, when I was a child, my parents worked in another city for a long time. During this time, I was living with my grandpa. At the very beginning, we did not get along well. But as time went by, we became close. For me, this kind of family love is worth recreating.BLOOM: We see Yu'er using a crutch or being pushed in a cart or carried on Grandpa's bike, but we never see her in a real wheelchair. Is there a reason?Nie Jun: I really have to explain that: a wheelchair is very inconvenient in the old Beijing streets. The gates have high threshholds. There are also many stone steps and no elevators. That's why Yu'er usually uses a crutch.

And the cart she is pushed in is not like the cart we see in supermarkets. In Beijing, we call it "Dao Qi Lv (riding a donkey in reverse)." It's a kind of common bike with a cart in front of it, and it's very convenient. This design is more like the rest of what you see in the old street, and it makes Yu'er's life not that different from others. I hope that in the eyes of readers, she is a very cute and ordinary little girl who grew up in a hutong.BLOOM: At the end, Pumpkin gets a second lease on life when he begins teaching Yu'er how to paint. What do you learn from your students?Nie Jun: I am now working as a visiting teacher at the Beijing Film Academy every Tuesday afternoon. Mainly I discuss the creation of comic stories with my students, from how to write a scenario at the beginning, to how to finish the whole work. In the process, I've learned that a creator should never discard curiosity about the unknown world, even if your guess is very wild or might disappoint you when you contrast it with the real world. As you mature and your knowledge increases, you will find the difference between your imagination and reality becomes smaller and smaller. It may be a good thing, but it also means that a creator can become more cautious.

So maybe the most precious thing for a creator is always keeping a childlike curiosity. Just like what Pumpkin said when he saw Yu'er's work, it has a moving, innocent power.BLOOM: What ideas about disability do you hope children take from the book?Nie Jun: An equal relationship is the most important thing. Do not treat people with disabilities with exclusion or pity. Step past your differences, learn from each other's heart.BLOOM: As this is your first book in English, what ideas about China do you hope readers take away?Nie Jun: I am very happy to have the opportunity to publish the book in English. I haven't been to America or Canada yet, but it makes me feel so excited that my work can be seen by more people (and special thanks to my agent, Mr. Wang Ning, who has given me a lot of help in these years).Although we are in different cultures, I believe that readers could feel lots of common emotions from the story, and I hope people who read this book could have a chance to visit China. Beijing is a city full of stories; it has a long history but is also developing rapidly. For this reason, the values and living standards of people here are making interesting changes. But I hope that through the story of an ordinary family in the old street, we can see those unchanging feelings and love for dreams.

Dr. Unni Narayanan (above left) is a pediatric orthopedic surgeon at the Hospital for Sick Children who sees patients at Holland Bloorview while they do their rehab here. Dr. Narayanan went to Madras Medical College in India and trained as a resident at the University of Minnesota. This included a rotation, and then an extra fellowship year, at Gillette Children's Specialty Healthcare in St. Paul, which is a leader in care for children with cerebral palsy. Much of his time at SickKids is spent teaching fellows and residents. A number of parents suggested Dr. Narayanan would make a great interview. One of these, Samadhi Mora Severino, explains why Dr. Narayanan stands out: "What I adore about him is how humble he is and how attentive he has been with Kian (above right). Kian is partially verbal but he makes all the effort in the world to engage with him. I remember when we were doing serial casting, he was wrapping the cast around Kian's leg so they could count together. Not all physicians can bond with children with severe disabilities. Kian feels safe around him and loved by him. Kian has made it clear that he wants to be a doctor one day, and I know Dr. N is his role model."

BLOOM: How did you get into the field?

Dr. Unni Narayanan: There are no medical people in my family, but I remember being interested in a career in medicine. I went to medical school in India from 1982 to 1987. At that time, people had blinders on, and a successful career meant being a doctor or an engineer.

Early on, I realized two things: I wanted to do surgery, and I wanted it to be a pediatric specialty. Some of the role models I saw were very caring individuals. It appealed to me—not just in terms of the surgical technical skills—but the complexities of working with children posed an extra set of challenges.

As a foreign medical graduate I was lucky to get a position at the University of Minnesota, and they had a very strong pediatric orthopedic program within the residency. It was their expertise and devotion to kids with cerebral palsy (CP) that greatly influenced what I did.

BLOOM: Of all the things you could do as a doctor, why surgery?

Dr. Unni Narayanan: The ability to see changes—that you’re actually affecting change in a very real way by altering the anatomy. But I think to a great extent it’s who your teachers are.

BLOOM: What types of surgeries do you do now?

Dr. Unni Narayanan: The major focus of my practice is cerebral palsy and broadly speaking there are two kinds of patients.

The first are kids who are able to walk, albeit with some difficulties. We do operations on them to help them walk better—walk further, faster and less inefficiently, so they have less pain, and can be more independent.

The second category is very different. These are kids who are more severely involved, who rely on a wheelchair for mobility and depend a great deal on a parent or carer to look after most activities of daily living.

The operations we do for these kids are focused on achieving one of the following goals: To prevent pain, if there’s a concern pain is likely in the future, or to relieve pain; to make it easier for parents to look after these kids; and to improve the kids’ health. All of these goals combine together to improve and preserve quality of life.

BLOOM: What is a typical day for you like?

Dr. Unni Narayanan: The first category of operations is focused on gait-related goals. They tend to be everything from simple, short procedures isolated to one leg or just the foot or ankle, all the way to surgery at multiple levels at the hips, knees, thighs, lower legs and foot and ankle—so several operations done concurrently over the course of the entire day, and the child could be asleep for six to nine hours.

Our operations with our more involved patients are almost invariably long operations. They focus on the reconstruction of hips. Many of these kids have hips that tend to slide out of place and, in doing so, will create pain—if not now, then in the future. Or they may have contractures, where the muscles are too short around the hip, which make it very difficult to diaper and dress them and position them. These are complex operations to put legs back in place or to release and lengthen tight muscles. For different reasons they are big operations that can last seven to nine hours.

BLOOM: How do you stand for so long?

Dr. Unni Narayanan: There are lots of occupations that require people to stand on their feet. If you’re serving coffee at Tim Horton’s, it's tiring at the end of the day. That’s where the training and repetition comes into these operations. And they are not done single-handedly. There’s a whole team involved.

First, there's the anesthesiologist, who is crucial not only to keeping the kids asleep, but instrumental in reducing the pain they’re likely to have after the operation by putting in epidurals and blocks. We have nurses who are really skilled at facilitating the procedure in terms of having equipment ready and helping with technical aspects. In the operating room I am fortunate to work at SickKids because I have the assistance of a fellow and a resident. The fellow is a qualified orthopedic surgeon—someone who is doing what I did 20 years ago.

The fellows need opportunities to do parts of the operation, but it has to be done under supervision, with me taking full and primary responsibility that the quality of what is done is as good as it can be. Usually at about mid-day I give my residents a break to get some lunch.

BLOOM: But you don’t take one?

Dr. Unni Narayanan: No. But that’s only because I’m not a lunch person. Some operations may take a lot more than 12 hours. For those types of operations we have to take a break, and we let parents know that will happen. The children remain safely asleep in a sterile area. BLOOM: What are the joys of the job?

Dr. Unni Narayanan: It’s quite a privilege to work with kids. My research interest is in trying to understand whether what we and others are doing is making a meaningful difference to their lives. When you see evidence of that, reported in ways that are more than just the technical difference—the hip is in—that’s very gratifying.

It may be that the child had pain before and that’s gone away, or the parent couldn’t dress them before, and now it’s easier. Or in the case of a child we are trying to help to walk better—is that translating into less tripping and falling, less pain, walking longer distances, and participating more with friends and in recreation or sports?

We’re working with two patients: the child and the parent. I can only imagine, and even that would be difficult, to put myself in the position of a parent who’s giving up full control of a child to someone for an extended period of time where invasive things are happening. To allow that to happen to your child requires me to have empathy for parents, and to engender the kind of trust that I have to earn. The entire process where you get to know a family and the child, and earn that trust over time, till a day comes where an operation is imminent, makes my work life gratifying.

BLOOM: What are the challenges of the job?

Dr. Unni Narayanan: In a condition like CP, understanding that one, we have no cure for CP, we can’t fix CP. A child with CP before the operation has CP after the operation. Recognizing that is important to me, but also how we communicate that to families over time, for them to understand, is not easy.

The primary problem is in the brain, not in the muscles and the bones, which is where I’m working. I’m working on the periphery, quite far away from the primary problem. I have to appreciate that the kind of changes we’re making, while they might be very helpful and go a long way to having a positive impact on children, may not entirely be at the level of what the parents’ hopes are.

That humility of understanding what the extent of our interventions can do, and communicating that, is a challenge, because, of course, parents have expectations that come from hopes, which are inevitable and understandable. It’s negotiating that.

BLOOM: Yes, I’m sure that parents have to grow into that kind of understanding of what the limits are.

Dr. Unni Narayanan: It doesn’t happen in one conversation, no matter how receptive a parent might be. It’s my responsibility to do it in an empathetic way, and in a way that doesn’t dash a parent’s hope—hope is an incredibly powerful mechanism to help families cope.

It’s also important to understand the perspective of the child. We’ve found that parents ascribe a certain level of concern about functioning that is consistently greater than what the child ascribes. Parents tend to make comparisons with their other children who don’t have CP, or with the child’s peers. Parents don’t live with the condition in their bodies, so their sense is that it might be worse than what the child [reports].

We need to understand the perspective of the child and the parents, and align our goals to take them both into consideration. These are not 10-minute appointments. They can take the better part of an hour.

BLOOM: How do you find the time?

Dr. Unni Narayanan: For new patients, we build that into the appointment, but the reality is I keep a lot of patients waiting in my clinic. I hope they realize, my apologies notwithstanding, that I’ve had to take longer than anticipated to have a difficult, complicated discussion and, having waited, they will also have that time when they need it.

Another challenge is that parents have access to all kinds of information from different sources—which is a good thing. They do their own homework and research, which allows them to ask questions.

However, sometimes they’re exposed to information that may not be well vetted and evidence-based. Yet it’s appealing, because large promises are made, which play to the vulnerability of their hope. They may ask how come we don’t offer certain procedures here. Is it because we don’t know what we’re doing?

These conversations can be difficult. There are unethical practices around the world, and south of the border, that take advantage of parents wanting to leave no stone unturned. And of course that is a completely appropriate sentiment. Why wouldn’t a parent want to explore everything possible? So how can I share information so that they trust what I’m saying, and I don’t leave them wondering could it be better somewhere else?

BLOOM: What emotions come with the job?

Dr. Unni Narayanan: As a health-care professional, empathy is essential. I enjoy interacting with the kids. I take great pleasure in getting them to crack a smile. If I have to do big operations on them they have every reason not to be happy with me. But I try to establish a rapport with them and have them not be afraid of me. We try to make it a less anxiety-ridden experience: having a sense of humour, teasing them and finding a way to make them laugh.

Another challenge is the operation on its own is insufficient, without the kind of support and therapy and rehab required to make operations work at the end of the day. For that we are extremely lucky to be a publicly funded health-care system. That allows us to have kids spend up to three months at Holland Bloorview for free, where they can get therapy every day and not miss a day of school. Those kind of supports are just not available anywhere else in the world. BLOOM: What about emotions you experience when an operation doesn’t go as you planned?

Dr. Unni Narayanan: I’ve heard some surgeons say ‘Would you rather be a compassionate surgeon or a competent one?’ You should be both. If something goes wrong, I genuinely feel badly about it, and I need to communicate that to the family. If I think I have contributed to that, I have to say I’m sorry. I’m responsible, and with that responsibility comes a level of caring—not only to take joy from when things go right—but feeling everything from regret to feeling sad or bad that something hasn’t gone right. Fortunately, that happens infrequently.

BLOOM: How do you help your fellows cope when things don’t go as planned?

Dr. Unni Narayanan: By being a role model. When something has gone wrong, they know it, and pretending it hasn’t gone wrong, or that it went wrong because of this and not that, causes you to lose credibility. Role modelling to the fellows to be honest. Saying ‘This is where we could have done better, where we made a decision, in retrospect, which was the wrong one.’

I need to walk the walk when I’m communicating with families, so that my fellows see that, and hopefully will incorporate it into their practice. By the way, there’s no one single way to be a good communicator, or to show empathy. Everyone has their own skill set, and their own personality, that they draw on.

BLOOM: You said earlier that humility is an important quality.

Dr. Unni Narayanan: Yes. But at the same time, we can’t hide behind humility for failures to do things properly in order to prepare for a complex operation. If something goes wrong, or is unexpected, it is despite that planning, not because we didn’t do the thoughtful planning ahead of time.

It’s my job as a teacher to model to my fellows and residents ‘these are the things I’m thinking about in how we came to the decision to go ahead. Here are the different things I’ve done to ensure when we go to the operating room, we will not be surprised, because we have thought about all of the different steps we may have to take if we encounter an unusual situation.’

Nine out of 10 times there’s a particular sequence of steps you will follow. In one of every 10 children, you’ll encounter something different about the child’s anatomy, or the way the child is presenting. How do you recognize that, and how do you make decisions intraoperatively? The more thought you’ve put into it ahead of time, it won’t come as a surprise. If we know something may happen, we will have backup plans. We shouldn’t ever say that something didn’t work out because we didn’t think about it ahead of time, and do our due diligence.

BLOOM: How do you manage stress?Dr. Unni Narayanan: I don't have any particular strategy to manage stress, but then I wouldn't describe stress as defining much of my work or personal life, beyond the average dose one expects. I play tennis for fun, and enjoy traveling and many other things with my wife, now that we are almost empty nesters. BLOOM: You direct a fellowship program in orthopedic surgery.

Dr. Unni Narayanan: One of the privileges of working at SickKids and Bloorview is that the fellows keep us accountable and fresh. They’re constantly asking questions: 'Why, why, why?'

BLOOM: What do you look for in terms of applicants?

Dr. Unni Narayanan: I have the privilege of going through 100-plus applications from around the world. I’m looking for clearly a track record supported by letters of recommendation and a CV and some sense from the personal statement about what his or her interests are in the future. We’d like to think we’re training the next generation of pediatric orthopedic surgeons and researchers who can be ambassadors.

Right now we have two fellows from the U.S., two from the U.K. and one from Portugal. Each year, we choose two from North America, and three from other parts of the world. Once I’ve created a short list, we do in-person and telephone interviews. When we do telephone interviews, five of my colleagues and I will have interviewed them, and we have a rating system.

BLOOM: But if two candidates look excellent on paper, is there something you look for in terms of their personality?

Dr. Unni Narayanan: The question is, how do you find that out in a single meeting, or in a telephone interview? I think we all imagine we can, and we do our best.

All things being equal, we look for diversity. For example, we recognize that last year we had no women in the program. This year we have three.

Another aspect of diversity is where they come from. Candidates who may otherwise be very qualified, but who apply from Southeast Asia or Africa or parts of South America, are at a huge disadvantage.

It’s harder to vet their applications because their health-care systems may be different from ours. I’m very proud to be a member of a division where my colleagues accept that from time to time, we need to take a chance on someone who looks good. I grew up in India and trained there, and if someone in the states hadn’t given me a chance 26 or 27 years ago, I wouldn’t be here. BLOOM: If you could change one thing about our children’s health system, what would it be?

Dr. Unni Narayanan: Working with kids with CP is not merely surgical. We work very closely with our developmental pediatricians and physios and other therapists throughout their continuum of care.

The big black hole is when they graduate, when they get to this arbitrary age of 18 or 19. What then? We have in place less than perfect ways for them to continue to get some oversight with our physical medicine and rehab counterparts who look after adults. But there simply isn’t, within the system, a critical mass of adult providers who have the expertise, and/or the experience, or the interest in providing care for adults with CP.

BLOOM: I don’t see this being addressed systemically. What might be a solution?

Dr. Unni Narayanan: There are different models and I don’t think any single model may work. We may have to have a multi-pronged way.

One is for us to get rid of this notion that SickKids and Holland Bloorview are pediatric institutions. For certain conditions that have their onset in childhood and are chronic, the system should continue to support the hospital to follow the patient across the lifespan.

At a higher level, the policy makers and Ministry of Health, in collaboration with us, should say that for certain childhood onset chronic conditions, we will make an exception to continue care. So rather than have Sunnybrook do a surgery for an adult, we will enable SickKids to do it.

Another idea is to have the system identify three or four providers who may have a niche interest in this population, and we would work with them. So perhaps I come to the adult institution because I know how to do this operation, and I need to get the privileges and time to do that. Or can we provide you with the operating room time at SickKids, because we are better equipped in taking care of the entire patient—we understand the other things that go alone with the condition.

BLOOM: What is it like working across two hospitals?

Dr. Unni Narayanan: We have two institutions—SickKids and Holland Bloorview—that work to complement each other. Most rehab in other places is done at a children’s hospital. We’re very lucky that it’s separated.

I much prefer seeing patients with CP and other chronic conditions at Bloorview, because I have more time there, and it’s designed and built to accommodate children in wheelchairs. Hopefully the clinics in SickKids’ new building will be friendlier to wheelchair access. Right now, our examination tables don’t go up and down, and there are no lifts, so it really isn’t designed for kids with chronic conditions. BLOOM: If you could give yourself advice on your first day, with the experience you have now, what would it be?

Dr. Unni Narayanan: Stick with it, because you’re going to be very happy doing what you’re doing. I’ve been very lucky, either by accident or design. I stumbled onto a sub-specialty I love, and an environment that is so supportive, that allows me to do what I’m doing. I have to pinch myself doing what I’m doing. And the kind of colleagues I have at Bloorview—with Darcy and Golda and my physio colleagues—and at SickKids, they are hugely influential mentors. I would not change anything.

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